Leilani is a beautiful 3-year-old girl with a complicated medical history that includes a lengthy NICU stay, Caudal Regression Syndrome, Chronic Respiratory Failure, open heart surgery and trach/vent dependency.
Upon her initial evaluation for Speech Therapy at 7 months of age, she had been unable to eat by mouth since birth. Her plan of care addressed severe oral aversion, oral-pharyngeal dysphagia, and oral feeding skill development.
Leilani’s parents wanted her to be able to enjoy eating food and drinking by mouth. During next 2 1/2 years, Leilani was treated by various THERAPY 2000 therapists who used a variety of interventions, including NMES to help her swallow, Passy Muir speaking valve to heighten her olfactory and gustatory senses, desensitization techniques to reduce her hyperactive gag and create positive oral experiences, flavor and taste trials, and most recently increasing her PO intake so that a tube weaning protocol can begin. Leilani’s early sessions were filled with tears, fear, and resistance but each therapist, each modality and every session was an important steppingstone to get her to the ultimate goal of oral intake.
Though Leilani is still using a feeding tube, she now eats 4-8 ounces 2 times every day! She is also super excited when it is time for feeding therapy and is highly motivated to eat. Leilani’s favorites are fruit and any baby food with avocado. In the last year, she has progressed from only extending her tongue tip for occasional tastes to daily spoon feedings. She also enjoys using the spoon to feed herself.
Most recently, Leilani has learned to suck purees from a pouch and drink from a straw. She still needs coaching to use her new skills with each different feeder, but this is much easier for her than it was in the past. Her mother and nurse participate in sessions so they can follow through when Leilani eats outside of therapy. Her mom is so proud of our progress and talks about all of her accomplishments at almost every session.
In 2 1/2 years, this remarkable little girl has progressed from being completely unable to eat by mouth to loving food, eating orally every day, and – most importantly – participating in mealtimes with her family. Her parents and doctors believe that with continued care, she can be weaned from her tube feedings completely.
Finally, Leilani’s dependency of the trach and vent have recently resolved.
As everyone says, “This is a completely different child.”
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